Cancer Patients Want Change
Patient Perspective Over 191,300 Canadians will be diagnosed with cancer in 2014, while nearly one million Canadians have survived cancer. These patients have needs that remain unaddressed, so leading cancer associations, organizations, and thought leaders are uniting to promote the changes that cancer patients want.
The Canadian Cancer Survivor Network (CCSN) works to connect patients, survivors, and other stakeholder groups with decision makers and the rest of the community to engage in discussion. The aim is to act on evidence-based best practices to alleviate the medical, emotional, financial, and social costs of cancer while encouraging research on ways to overcome barriers for optimal cancer care and follow-up for survivors in Canada.
Support for patients and caregivers
Last year, we conducted a survey in which we asked cancer patients and caregivers what they wanted. They needed support to deal with the physical side effects of treatment and surgery. They also wanted support with mental health issues, changing family dynamics, financial issues, and difficulties going back to work. They were also afraid of cancer spreading or coming back.
Support comes in many types — from a hand to hold when the news is bad, a support group where patients share common fears, frustrations as well as good news, a sympathetic voice on the other end of the line, even something as simple as a hug when things get tough — these all help different patients in different ways. Support can also be information that is clear and understandable, certainty about what is going to happen next (and when it is going to happen), or help in navigating the cancer care system so that treatment is appropriate and timely.
Timely access to drugs
When you are diagnosed with cancer, you want timely access to the best medicines to stop your cancer in its tracks. You want to prevent it from recurring, and to stop it from spreading. If it has spread, you want immediate access to drugs that will stop it from progressing and help you maintain pain-free quality of life.
Although, depending on where you live in this country, you may not have timely access to the best medicines — and even if you do, you may not be able to afford them!
“One in six patients reported difficulty in accessing current or effective treatment options and reimbursement of drug costs.”
A recent Léger survey fielded by CCSN revealed worrisome gaps in access to drugs: one in six patients reported difficulty in accessing current or effective treatment options and reimbursement of drug costs. When you translate this into the two in five Canadians who are likely to develop cancer in their lifetime, we are talking about thousands of people who have difficulty accessing cancer medication every year.
Financial needs and return to work
A recent Canadian Cancer Society study showed that nine out of 10 cancer patients experienced financial challenges, including loss of income, increased debt and even bankruptcy.
The Léger survey found that one in five patients had trouble finding flexible work options while battling cancer and nearly half of caregivers struggled to care for their loved ones while working. For patients, barriers to returning to work were mainly related to side effects of surgery or treatment. Some survivors also said that they were forced to leave their jobs due to cancer-related fatigue or other complications.
Ongoing support after diagnoses through treatment and post-treatment, timely access to drugs, adequate financial support during cancer treatment, and meaningful help to ensure a smooth return to work — these are the things that cancer patients and their families want. Let’s work together to make sure patients get what they need now!